Dataset Information

Survey of patient and public perceptions of electronic health records for healthcare, policy and research: study protocol.

ABSTRACT:

Background

Immediate access to patients' complete health records via electronic databases could improve healthcare and facilitate health research. However, the possible benefits of a national electronic health records (EHR) system must be balanced against public concerns about data security and personal privacy. Successful development of EHR requires better understanding of the views of the public and those most affected by EHR: users of the National Health Service. This study aims to explore the correlation between personal healthcare experience (including number of healthcare contacts and number and type of longer term conditions) and views relating to development of EHR for healthcare, health services planning and policy and health research.

Methods/design

A multi-site cross-sectional self-complete questionnaire designed and piloted for use in waiting rooms was administered to patients from randomly selected outpatients' clinics at a university teaching hospital (431 beds) and general practice surgeries from the four primary care trusts within the catchment area of the hospital. All patients entering the selected outpatients clinics and general practice surgeries were invited to take part in the survey during August-September 2011. Statistical analyses will be conducted using descriptive techniques to present respondents' overall views about electronic health records and logistic regression to explore associations between these views and participants' personal circumstances, experiences, sociodemographics and more specific views about electronic health records.

Discussion

The study design and implementation were successful, resulting in unusually high response rates and overall recruitment (85.5%, 5336 responses). Rates for face-to-face recruitment in previous work are variable, but typically lower (mean 76.7%, SD 20). We discuss details of how we collected the data to provide insight into how we obtained this unusually high response rate.

SUBMITTER: Luchenski S

PROVIDER: S-EPMC3464182 | biostudies-literature | 2012 May

REPOSITORIES: biostudies-literature

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Publications

Survey of patient and public perceptions of electronic health records for healthcare, policy and research: study protocol.

Luchenski Serena S Balasanthiran Anjali A Marston Cicely C Sasaki Kaori K Majeed Azeem A Bell Derek D Reed Julie E JE

BMC medical informatics and decision making 20120523

<h4>Background</h4>Immediate access to patients' complete health records via electronic databases could improve healthcare and facilitate health research. However, the possible benefits of a national electronic health records (EHR) system must be balanced against public concerns about data security and personal privacy. Successful development of EHR requires better understanding of the views of the public and those most affected by EHR: users of the National Health Service. This study aims to ex ...[more]

PMID: 22621621

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Project description:BackgroundA public that is an informed partner in clinical research is important for ethical, methodological, and operational reasons. There are indications that the public is unaware or misinformed, and not sufficiently engaged in clinical research but studies on the topic are lacking. PARTAKE - Public Awareness of Research for Therapeutic Advancements through Knowledge and Empowerment is a program aimed at increasing public awareness and partnership in clinical research. The PARTAKE Survey is a component of the program.ObjectiveTo study public knowledge and perceptions of clinical research.MethodsA 40-item questionnaire combining multiple-choice and open-ended questions was administered to 175 English- or Hindi-speaking individuals in 8 public locations representing various socioeconomic strata in New Delhi, India.ResultsInterviewees were 18-84 old (mean: 39.6, SD ± 16.6), 23.6% female, 68.6% employed, 7.3% illiterate, 26.3% had heard of research, 2.9% had participated and 58.9% expressed willingness to participate in clinical research. The following perceptions were reported (% true/% false/% not aware): 'research benefits society' (94.1%/3.5%/2.3%), 'the government protects against unethical clinical research' (56.7%/26.3%/16.9%), 'research hospitals provide better care' (67.2%/8.7%/23.9%), 'confidentiality is adequately protected' (54.1%/12.3%/33.5%), 'participation in research is voluntary' (85.3%/5.8%/8.7%); 'participants treated like 'guinea pigs'' (20.7%/53.2%/26.0%), and 'compensation for participation is adequate' (24.7%/12.9%/62.3%).ConclusionsResults suggest the Indian public is aware of some key features of clinical research (e.g., purpose, value, voluntary nature of participation), and supports clinical research in general but is unaware of other key features (e.g., compensation, confidentiality, protection of human participants) and exhibits some distrust in the conduct and reporting of clinical trials. Larger, cross-cultural surveys are required to inform educational programs addressing these issues.

Project description:BackgroundThere is increasing awareness of the importance of patient activation (knowledge, skills, and confidence for managing one's health and health care) among clinicians and policy makers, with emerging evidence showing higher levels of patient activation are associated with better health outcomes and experiences of health care. This study aimed to examine the association between patient activation and a wide range of specific types of healthcare service utilisation in England, including GP and non-GP primary care, elective and emergency hospital admissions, outpatient visits, and attendances at the Accident and Emergency department.MethodsData were derived from linked electronic patient records collected by primary and secondary healthcare providers in North West London between January 2016 and November 2019. Our analyses focused on adults (18+) with a valid Patient Activation Measure (PAM). After excluding patients with missing data, we had an analytical sample of 15,877 patients. Data were analysed using negative binomial regression and logistic regression models depending on the outcome variable.ResultsPatients had a mean activation score of 55.1 and a standard deviation (SD) of 17.7 (range: 0-100). They had an average of 5.4 GP visits (SD = 8.0), 26.8 non-GP visits (SD = 23.4) and 6.0 outpatient attendances (SD = 7.9) within a one-year follow-up. About 24.7% patients had at least one elective admission, 24.2% had one or more emergency admissions, and 42.3% had one or more A&E attendance within the follow-up. After accounting for a number of demographic and health factors, we found a linear (or proximately linear) association between patient activation and the number of GP visits, emergency admissions and A&E attendance, but a non-linear relationship between patient activation and the number of non-GP visits, the number of outpatient attendance and elective inpatient admission.ConclusionsThis study has provided strong empirical evidence from England linking patient activation with healthcare service utilisation. It suggests the value of supporting patient activation as a potential pathway to ease the burden of healthcare system.

Project description:BackgroundInternationally, there is a movement toward providing patients a Web-based access to their electronic health records (EHRs). In Sweden, Region Uppsala was the first to introduce patient-accessible EHRs (PAEHRs) in 2012. By the summer of 2016, 17 of 21 county councils had given citizens Web-based access to their medical information. Studies on the effect of PAEHRs on the work environment of health care professionals have been conducted, but up until now, few extensive studies have been conducted regarding patients' experiences of using PAEHRs in Sweden or Europe, more generally.ObjectiveThe objective of our study was to investigate patients' experiences of accessing their EHRs through the Swedish national patient portal. In this study, we have focused on describing user characteristics, usage, and attitudes toward the system.MethodsA national patient survey was designed, based on previous interview and survey studies with patients and health care professionals. Data were collected during a 5-month period in 2016. The survey was made available through the PAEHR system, called Journalen, in Sweden. The total number of patients that logged in and could access the survey during the study period was 423,141. In addition to descriptive statistics reporting response frequencies on Likert scale questions, Mann-Whitney tests, Kruskal-Wallis tests, and chi-square tests were used to compare answers between different county councils as well as between respondents working in health care and all other respondents.ResultsOverall, 2587 users completed the survey with a response rate of 0.61% (2587/423,141). Two participants were excluded from the analysis because they had only received care in a county council that did not yet show any information in Journalen. The results showed that 62.97% (1629/2587) of respondents were women and 39.81% (1030/2587) were working or had been working in health care. In addition, 72.08% (1794/2489) of respondents used Journalen about once a month, and the main reason for use was to gain an overview of one's health status. Furthermore, respondents reported that lab results were the most important information for them to access; 68.41% (1737/2539) of respondents wanted access to new information within a day, and 96.58% (2454/2541) of users reported that they are positive toward Journalen.ConclusionsIn this study, respondents provided several important reasons for why they use Journalen and why it is important for them to be able to access information in this way-several related to patient empowerment, involvement, and security. Considering the overall positive attitude, PAEHRs seem to fill important needs for patients.

Dataset Information

Survey of patient and public perceptions of electronic health records for healthcare, policy and research: study protocol.

Background

Methods/design

Discussion

Publications

Survey of patient and public perceptions of electronic health records for healthcare, policy and research: study protocol.

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